Friday, October 18, 2013

Live and Learn

 What I've learned in the last four years of parenting my child with special needs. I want to thank my daughter, Sophia, for teaching me all that she has in these years and for helping me to become a person today than I was yesterday and different from the person I was 4 years ago.

 - YOU WILL MAKE MISTAKES! Yes, I said it and it's true. You will make mistakes along this journey and it's ok. The good thing is that one day you'll look back at those silly mistakes and laugh. You'll know it wasn't intentional and you'll know it was ok. When Sophia first came home from the hospital after receiving her g-tube; her first feeding was a big, UH-OH! It was my first tube feeding and I fed her 4 ounces in 5 seconds flat. She immediately threw up all over me. She was crying. I was crying and in that moment I thought I was the worst mother in the world.

 - YOU ARE NOT THE WORST MOTHER/FATHER IN THE WORLD! No matter how big your uh-oh is, know you made it by trying to do the best thing for your child. The worst parent in the world wouldn't try much less care when things don't go as planned.

 - YOU ARE DOING ALL YOU CAN DO FOR YOUR CHILD! So many times I've researched the internet and sought out different therapies, foods, toys, medicines, etc. All because I was looking for that one thing I didn't know about. What if there is something I'm missing. What if I'm not being everything she deserves? The truth is, I am. The truth is, you are. We all are doing our very best in this very moment and that is all we can do. Be proud of that!

- SANITARY IS CLEAN! So your house has toys sprawled about. There are dishes in the sink, clothes folded neatly on the couch, beds unmade, floors that need scrubbing, dusting that needs done. The point is, you are a parent. You have a child with special needs and that in itself takes up the majority of your time. I wouldn't necessarily eat off my floors but my house is sanitary. No one expects your house to be spotless and if they do kindly invite them over to clean it themselves.

- TAKE CARE OF YOU! It can be hard to remember yourself in the daily activities of juggling life with a special needs child but it's important to remember yourself. Do something for yourself every now and then even if that something is sitting on your back porch with a cup of coffee. No matter how big or small your something is, do it!

- PEOPLE WILL STARE! Most don't do it out of ignorance, although there are a few that do, in general people are simply curious. Take my case for example. Sophia has very obvious physical features that many people have never seen. I'm sure at first glance their minds instantly think, "Did I just see what I think I saw?" So they begin to look with questioning eyes. It's ok. Take that opportunity to spread awareness and educate others on your child and their condition. No matter what your child has, spreading awareness is key to ending discrimination.

- GET INVOLVED! Get involved with other parents and families with special needs children. It will make a huge difference and help you cope in times of need. We NEED one another. We NEED the bond with others who understand our struggles and know what to say when we need it said. We NEED that strong network of parents who have walked our in our shoes before us and those who have just started down the path.

- FORGIVE THEM! You know exactly who I'm referring to. Those people who say silly things such as, "God only gives us what we can handle." While in that moment you probably want to scream "So then tell me just why God thinks my child should handle this and not yours?!" The best thing we can do is know their intentions are good and forgive them. Most people don't know what to say to us. They don't know how to tell us, "I'm so sorry you and your child are having to deal with this. If there is anything I can do to help please just let me know." Then again, there are times when you don't even want to hear another person say, "I'm sorry." Truth is, there are times no matter what people say to us, it's the wrong thing to say.

- LISTEN TO YOUR INSTINCTS! While doctors are trained in medicine and have the very best intentions at heart a parents instinct is unmatched. You know your child better than any one else on earth. Do what you know needs to be done.

- NEVER GIVE UP! If I had a penny for all the things I was told Sophia would never do I'd be rich by now. Don't listen to all the things these so called specialist say your child wont do. Always, always, always, hold on to hope because there are days when that hope is all that gets us through.

Parenting is never easy no matter what your life circumstances are. Bask in the thought that you are never alone. Some have it easier, some have it much harder, but this is your life and you have to make the best of it. Show off your child with special needs just as you would any other child. Know that the rest of the world smiles when you share their accomplishments no matter how big or small. Humanity is not so bad after all.

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